Friday, August 10, 2012

For the next edition of Patients for a Moment, Duncan Cross asks how we roll with chronic illness. Since I’ve made two fairly long car trips in the past couple months, travel is a timely topic for me.

When I read the prompt, I couldn’t help but pull up a post from the vault, this entry from July of 2006 that captured my most humiliating experience ever. Click on over for the gory details, but it involves airline inconsistency, public disclosure of personal health details, an insensitive bully, a whole lot of red-faced shouting, and The Vest, my expensive and unwieldy piece of medical equipment. Good times.

Aside from traveling to see family, we don’t really have a chance to travel much. In fact, a five-day trip this spring was the first real true vacation we’ve had in years. We haven’t had the time—and haven’t made the time, I suppose. But beyond that, I end up having to cancel things at the last minute often, which makes me hesitant to plan too far ahead. I end up paying a steep price whenever I do make a trip, even a short overnight for a conference or a meeting. Inevitably, I catch something from being on the airplane, and it takes weeks, sometimes months, to clear my system.

So, given that airline travel makes me sick, and my hesitancy to purchase the ever-expensive plane tickets too far in advance, when we do need to be somewhere, we’ve started driving. (Unless it is just too far and too short or a trip, or we find a great deal on tickets, and it’s not cold/flu season, etc.) We have family in Michigan, so years of 12-hour drives have helped condition me. We can control how long we’re on the road, we can stop if we need to, and we honestly, we really love the chance to just chat. Sometimes we’re several states in before we even turn on the music.

By now, we know which rest areas have viable food options for me, as gluten-free food is tough to find on the road. We know which hotels take dogs, which routes have the best views, and the best spots to fill up on gas.

I’ve learned to keep my “regular” meds in my purse in the front so I can reach them easily. We pack tons of water and low-sugar drinks, and I’ve started bring a cooler of healthy snacks—balanced nutrition bars, trail mix, yogurt, etc. That way, if the (scant) salad offerings are more meager than usual, I know I have something to eat that is gluten-free and has protein. I keep my brain fog in mind when we divvy up the driving.

(And for the toddler? Lots of books, snacks, and a mini DVD player she watches Baby Signing Time and Sesame Street on. She can turn it on and off, rewind/fast forward, and change the volume on her own, which makes the process pretty painless. So far, we’ve been really luck she rolls so easily and without complaint.)

Of course I do fly and take the train at times, but taking travel into my own terms (and staying healthier for it) has made a big difference.

Monday, August 06, 2012

It was just a passing comment, something I didn’t even think about as I said it.

“I’ll take this shift now, so I’m not driving later in the afternoon.”

We were making a 10-hour drive to Virginia, and we usually trade drivers every few hours on long car rides. Late afternoon, from about 3pm-6pm, is my dead zone, so I wanted to avoid being behind the wheel on monotonous highway stretches if I could.

I am not sleepy then, per se, but I am spacey. I turn pale, I can’t focus or concentrate, I start sentences and don’t remember where I am headed with them, I make dumb mistakes and forget things. I miss turns or get lost. Everything simply drains out of me. Sometimes I start the day like that and it doesn’t go away, sometimes it’s hardly noticeable, but it’s always there.

(And it’s not the exhaustion that motherhood and sleep deprivation cause, though I am the first to admit that the intense sleep deprivation I’ve had the past two years juggling parenting, working, and writing a book has made it much, much worse.)

Brain fog. It’s not so incapacitating that I don’t usually just push through it—really, at that time of day, what other choice is there? I’m in the classroom then, or playing with my daughter, or cooking dinner or going to a playdate or having chest PT. I grab a coffee, drink some water, and wait to get my second wind later in the evening.

It is present enough that it automatically factored into our driving schedule, though, and that meant something.

That passing remark was probably the first direct comment about it I’d made in months, if not years, beyond the simple “yes” I reply when my husband looks at my face and says “You’re off, huh?”

Brain fog. Being “off.” It’s not something I talk about on this space, either. Granted, I really haven’t written about illness of any kind these days, but it just is, it is such a part of everyday life.

I am not even positive how I should attribute it: Partially, it could stem from my adrenal system, which has never been the same since my total adrenal failure several years ago. I’ve never really been the same since that happened. The chronic fatigue I’ve had since I was diagnosed in high school is another obvious culprit. Then there’s the whole breathing thing—when I’m wheezy, congested, or too “tight” it can cause me to be drained and spacey, and when I have an active infection, that obviously gets much worse.

It doesn’t really matter which condition contributes which percentage, since none of them are going anywhere. I do know I wasn’t always like this—I had acute flares with chronic fatigue, of course, but I wasn’t always this dependably and overwhelmingly out of it on a regular basis. It has crept up on me incrementally, and that small conversation about driving really made me step back and think about how long it has been.

So, brain fog. Lots of you have it, lots of conditions and medications can cause it. How does it affect your daily life? What accommodations do you make for it? And any tips beyond guzzling coffee?

Friday, August 03, 2012

It’s been quiet around here, quieter than I’d planned but so much of this summer has not exactly gone according to plan, so I’m trying to roll with that.

Since we last spoke about Lyme disease and its co-infections, we’ve had weeks of renovations, moving, unpacking, some health crises, etc., but we’re finally getting settled.

There is a whole lot of “new”—new town, new house, new physical therapist, new job responsibilities, and more, right now.

But in spite of the long (hot) hours working on the house, the juggling, and the overall upheaval of the past couple months, it’s beginning to feel like home. My office is unpacked, and my desk overlooks a window with a stream of sunshine and a rather bucolic view. My daughter knows where all her toys and books belong, and loves her yard and her porch. “Hello, new house!” she exclaims when we pull into the neeighborhood. “Goodbye new house! Goodbye flowers and trees and water table!” she calls merrily when we leave.

And it feels like more than simply new; it feels like the beginning of something better. There is a lot say about that, and about getting a new physical therapist, and about juggling work and illness, and about parenting an almost-two-year-old, and so much other stuff.

(And I just got my copy edits on my manuscript back—I have an ISBN, people. This is getting real!)

Now that my physical space is sorted a bit, I’m finding my mental space is realigning too, and I can better focus on this virtual space. I’m working on a bunch of posts, and more long-term, working on a new look and feel.

For a long time, I’ve struggled to regain my rhythm. Life needed a reset button, and I think I found it.